Improving outcomes for people with LTNCs

Building services for the future

Improving outcomes for people with LTNCs

People with LTNCs reported that it was important to feel ‘normal’, to have a purpose and to be valued as an individual in their own right.
Bernard et al 2010, p104

The studies in this research initiative have given us a clearer picture of what is needed and what works for people affected by LTNCs. In essence, the combined research tells us that the following three broad outcomes are required:

Outcome 1: To be better supported in getting a diagnosis, adjusting to and managing the condition – good continuity in healthcare;

Outcome 2: To be able to get on with the “ordinary business of everyday life” and to be better supported in doing so – good continuity in social care;

Outcome 3: To have increased opportunities to participate in, and contribute to, society on equal terms – improved social and economic inclusion.

The individual service components that can help deliver these outcomes will require a whole-system approach in which people with LTNCs and their families are as involved as possible from the very beginning. It is not a matter of providing one element or another – services have to inter-relate and complement each other, so they have to be planned strategically. People with LTNCs and their carers need to feel confident that their requirements will be met in ways that they can trust, that are effective, reliable and easily accessed and that their expertise in living with the condition is recognised.

We now consider how each outcome can be met before presenting a model to develop a strategic vision for future services.

Outcome 1: Being better supported in getting a diagnosis, adjusting to and managing long-term neurological conditions – good continuity in healthcare

The diagnosis of a neurological condition is a critical turning point in a person’s life and it should be the key to unlocking access to the expertise and support needed to come to terms and live with it. The evidence from this research initiative indicates that people are waiting considerably longer than the 13 weeks, cited in Getting the Best from Neurological Services, as the maximum waiting time to expect from initial GP consultation to seeing a specialist. (Neurological Alliance, 2006).  Getting a diagnosis can take up to six months; a year or even longer for rarer conditions. Further research and development work are needed to understand how the factors that contribute to such delays can be addressed.

There is strong evidence to indicate that Community Inter-disciplinary Neuro-Rehabilitation Teams (CINRTs), which bring together a range of relevant health and social care specialists to provide services, are an integral part of diagnosing, treating, monitoring and managing neurological conditions.

Such a service should be one of the core health-care components that ensure continuity and would therefore need to provide access to a broad range of condition-specific services (such as nurse specialists with expertise in specific health conditions, physiotherapists, occupational therapists, speech and language therapists, psychological and emotional support, vocational rehabilitation, palliative care). It would have strong links to other community, social work and voluntary organisations, housing, equipment, counselling, education and employment services. It should play an active role in education and awareness-raising programmes to support staff development and working relationships across sectors and agencies.

Outcome 2: Being able to get on with the business of everyday life and being better supported in doing so -– good continuity in social care

The evidence is clear that current systems of managing demand for services have led to pressures to discharge people and close cases as quickly as possible.  As we have seen, people with life-long health conditions require ongoing care and support that are responsive to change and over time. We need to ensure that people can rely on having a single point of contact to turn to as their circumstances change over time.

Currently this role is often assumed by community-based nurse specialists, or other knowledgeable advisers such as welfare officers from voluntary organisations, who act as key workers and facilitators. Such positions are often initiated and established by voluntary organisations in partnership with specialist health services in response to gaps in provision. The individuals involved have a wealth of knowledge and expertise to share and are often the key people who liaise with CINRTs, social services, housing and other community organisations and help to coordinate services, once an individual is discharged from a health or rehabilitation service.

Social services have a vital role to play in preventative services that enable people with LTNCs to access services, address concerns as they arise and reduce the risk of emergency admissions to hospital or residential care. This will require strong partnerships and effective communication systems between social services, community-based health teams and voluntary/third sector organisations, as described above, to achieve this.

There is now a body of evidence from this research initiative (Abbott and Carpenter, 2009; Cook and Atkin, 2011; Jackson, 2011a and b;) and elsewhere, (SCIE, 2009) that personalised services for people with LTNCs and their carers should offer the kind of support that facilitates choice, such as community-focussed brokerage. Direct Payments and individual budgets are a means for some people to self-manage but better support and information about alternative options (e.g. to provide support with employing care workers) often needs to be more readily available.

Timely provision of equipment and home adaptations are also shown to be major contributors to independence in daily life and carer assistance. Information, advice and support to use personalised budgets to purchase or rent equipment (as well as purchase care services) are other areas for development. There is scope for user-led organisations that support independent living to offer such brokerage, advocacy, peer support, information and advice services. This will require them to have partnerships with local authorities as set out in the Building Stronger Communities strategy and described in “Practical Approaches to Improving the Lives of Disabled and Older People through Building Stronger Communities” (DH, 2010).

Carers require a range of flexible options for high quality replacement and respite care and ready access to services in an emergency. Wider recognition of carers’ roles and responsibilities within health and social care, as set out in the Government’s inter-departmental policy document ‘Recognised, valued and supported: next steps for the Carer’s Strategy (DH, 2010) will help to identify need and demand and also inform development of the care market. Education and training programmes for care staff will be a vital part of future service development strategies.

Outcome 3: To have increased opportunities to participate in, and contribute to, society on equal terms  – improved social and economic inclusion.

People with LTNCs require ongoing access to resource, community or leisure centres, or other day opportunities, that offer culturally sensitive peer support and social contact, personal development, gainful occupation, leisure pursuits and help with finding employment. These services could also usefully offer help with care co-ordination, information and advice about what’s available from other community facilities and support and options for respite and replacement care. As we have discussed, the potential for voluntary or user-led third sector organisations to provide these types of services already exists but they cannot develop and flourish without a commitment to strong partnerships and support from public sector bodies. They have an important role to play in raising awareness and promoting social inclusion so that other community facilities become more accessible and usable by people with LTNCs.

Innovation and leadership are needed to improve access to vocational rehabilitation or other employment support services that enable people with LTNCs to learn new skills or manage their condition so that they can achieve their aspirations for work or meaningful occupation. This will also contribute to wider integration and social inclusion of all those involved.

The TEAR model for future services

It is clear that there is still work to be done on building better communications and stronger inter-connections between neurological and other health and care services and local organisations if we are to ensure that expertise is available in different settings from the point of diagnosis onwards. But there is another more fundamental aspect that also requires urgent attention. This is the cultural shift needed to create services where professionals and service users have the time and space to build relationships and engage in the kind of open dialogue that will deliver effective health and care interventions and support people to manage their own care where they can. Cook and Atkin’s case study indicates that it takes time, energy and commitment from all concerned, but the investment is necessary to achieve effective and cost-effective outcomes for people with LTNCs. The “nothing about us without us” approach taken by Cook and Atkin in their participatory research methodology, which is echoed in current policy and espoused by Advisory Group members in the Foreword to this report, is key to addressing this.

The TEAR approach presented in Figure 1 has been devised to bring together the findings from this research initiative in diagrammatic form as an aid to planning and delivering effective services. The starting point for the TEAR approach is the person whose life is affected by a LTNC. The model encapsulates core requirements for different service components and aspects of delivery that combine to improve outcomes for people with LTNCs and their carers.

The concept of community-focussed brokerage is promoted by In-control, a national charity, to encourage development of an infrastructure to provide support for self-directed support as widely as possible.
Accessed 22.12.2011



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